Saturday, March 31, 2012

Infertility: The Elephant in the room




I met with a baby loss Mom last night after work.  Oddly enough she met me through this blog, such a strange electronic world we live in.  Talking with her was really good, and sad, and eye opening.  There were so many things that were clear for once.  One of those things was that her loss and mine were different that many other baby loss moms because we also both struggled with infertility.  It was like there were two losses: the innocence about conception and fertility and the loss of our babies.  I read on sites about women trying to plan when to have their rainbow babies and it just makes no sense to me because I know that I cannot decide to start trying again and have quick success.  There are many parts of my story that I still need to share, but I should start at the beginning with my fertility problems...

January 2006:

I was 29 years old and getting married for the first time.  I had not dated that many men in my life, and had put that part of my life on hold for years while completing professional school, then an internship and then getting established at a busy general practice.  Mark was fantastic and we made sense together despite our age difference.  He was 14 years older than me, but it is true when you love someone age really does not mean anything.  He wanted to start a family right away, I resisted.  I had spent so much of my life in school and then at work that I felt like I needed to live more before getting tied down with children.  And to be completely honest I was not even sure that I wanted children.  I had been caring for members of my family my whole life and I did not feel that I needed something more to take care of.  God, how stupid this all seems now.

2006-2007

Married life went by, we went on vacations and lived life.  I changed jobs, we got more pets, some of our old pets died.  Mark brought up the idea of children again, and it seemed more doable.  I felt stable in our relationship and increasing our family felt like a natural progression.  We still did not stop using birth control.  We were living in the 2 bedroom, 1400 sq ft town home that I bought as an intern and we were at capacity.  We hired a realtor, who was a friend of ours, to look for a home.  Once we had a real house with more space and a yard, then we could have a baby.  That process took an entire year.

May 2008

We finally got the good news that our offer on a short sale house had been accepted.  We moved into our new home.  Big backyard, swimming pool, 3 bedrooms and an art studio, a living room, dining room and a library/family room.  It was perfect.  The year of looking at homes every weekend and thinking about what room would be the nursery and if the yard would be good for a child had heightened my desire to become a mother.  Plus the first of my good friends had started to become pregnant and have babies.  All of a sudden babies were REAL and I did not have one.  You know that biological clock that people talk about?  Well mine was ticking loudly.  Well now we had the house we were go for baby making.  We stopped using birth control.

So I had this crazy idea about getting pregnant.  I blame sex education.  I thought that you had to prevent pregnancy diligently because you could get pregnant at the drop of a hat.  Hell you could get pregnant USING birth control.  So we stopped birth control and we should have sex a few times and then BAM, baby.  I had always had such regular cycles, I felt ovulation pain, I must be a paragon of fertility.  My mother had three unplanned pregnancies, she always said how fertile she was.  The apple must not fall too far from the tree...  Holy crap was I wrong.

All of a sudden I was crying every month when my period would start.  It was not easy to get pregnant.  I talked with Mark about using ovulation predictor kits.  He said we didn't need them, we just needed to make sure to have sex around cycle day 14.  Well that didn't work.  8 months go by.  Then we got the kits and got a tiny bit more educated about fertility.  The OPK were hard to use and expensive.  I started with the clear blue digital sticks.  I peed on them day after day and got nothing, I would think that they must be wrong, it was like cycle day 18!  Then a stupid smiley face, baby sex time, but one of us would be tired and hey you have like 2 days to have sex once you get a positive right?  No late period, nothing.  Then I got the cheap ones so it would not be so expensive per cycle and I could start to test sooner, not waiting til cycle day 10 like the expensive sticks.  Well they were cheap for a reason, they were so hard to read!  Was the second line as dark as the control?  Why was it completely negative the following day, then two days later really dark?

Dec 2009

I had selected an OB/Gyn maybe a year before, all with a baby in mind.  I knew what hospital I wanted to deliver at and chose an OB who had privileges there.  I had seen him for a few pap smears with him and seen him for a few small issues and I liked him.  I was in for my annual and had some of that weeks test strips to ask him about.  I also was really starting to worry that there was something wrong with me since I was not pregnant yet.  My exam was normal.  I said that we had been not using birth control for some time and had been using these kits for 6 months and nothing.  He said that we had not been trying all that long yet, but I was 32, not 22 and if there was a problem it would be better to know about it sooner as opposed to later.  He ordered a semen analysis for Mark.  It came back good, not great, but not a cause for lack of conception.  He said that the next step was to see a fertility specialist and get some testing done on me.  I did not want IVF and told him as much.  He said that they would have a variety of treatment options.

Jan 2010

I had my first appointment with Dr C (fertility specialist). We were just going in for testing to see if there was a problem, not for treatment. He performed a pelvic exam, an ovarian ultrasound and some blood work (thyroid, FSH, LH, etc).  He found a cyst on my ovary and prescribed a medication to rupture it and told me to come back in a month for another ultrasound.  My hormone levels were not terrible, but not ideal.  The follow up ultrasound had the same cyst present, no change, but the US tech saw that it was not in my ovary, but around my fallopian tube.  She called in a paratubal cyst and said that it was like having a freckle, it meant nothing and was not affecting my fertility.  At the next consult he recommended that my next cycle we try for an IUI with just an oral medication called Femara.  We would also have an HSG done on the same cycle, he would use an oil preparation after the dye through the tube and that would help clear out any debris or mucous that could be preventing sperm from getting to my eggs. It all sounded good and reasonable.  I am not sure when we crossed the line from diagnostics only to diagnostics AND treatments, but we were over the line.

I was nervous about the HSG, that they would find a problem, that I would need surgery etc.  We went in and they got my in the gown, in the stirrups and went over exactly what would happen.  Dr C came in and got started in his usual brisk, super busy manner.  I'm a big girl I don't need a touchy feeling doctor.  He put in the speculum, it was painful, but hey I would relax and it would hurt less.  Then he started to try and place the catheter through my cervix, no luck, he repositioned and tried again, still no luck.  He tried two other catheters and could still not get them through.  He started calling for other instruments.  The nurses got them and he tried those to help, still nothing.  Then he called for the tenaculum, you could hear this hush go over the nurses.  It is an instrument with sharp prongs at the end, it looks like a medieval torture device.  He used it to grab my cervix and pull downward in an attempt to straighten it and feed the catheter through.  It did not work, by now I am sobbing and the nurses are holding my hands and holding me down.  Then he said that it would not feed and we would have to try again when I was under heavy sedation.  They could not sedate me that day since I was told to eat prior to the HSG.  I got up with the help of the nurses.  I was shaking and could hardly walk.  There would be no IUI that cycle since he could not feed a catheter through my cervix.

At our follow up consultation we asked if this could be our fertility problem and he said no not likely.  He said that he would need to have me sedated and then he would dilate my cervix manually and then could perform the HSG.  Since I would have to be sedated anyway why not have a hysteroscopy at the same time?  It would only add $800 to the cost and hey lets be complete.  It made sense get all the testing done and less cost!  This was already getting expensive and my insurance covered nothing.

I went in and had the HSG and scope done under twilight sedation.  Everything went well, normal uterus, normal fallopian tubes.  My cervix was severely strictured, but he dilated it and it should stay good for about a year, then I would likely need the dilation done again.  We were green lighted to finally try an IUI.  Since the cycle we had our first attempted IUI with just Femara had few follicles he felt like just trying that again would not work.  We should try Femara and Follistim.  Hey I gave injections all the time I could inject myself, no biggie.  I went in for the cd10 U/S and I had a few small follicles.  I came back a few days later, they were larger, but not big enough, then my cd 19 when I finally had a good sized follicle they said it was too late in the cycle, so we could try timed intercourse but IUI would be a waste.  I was demoralized.  We had been dicking around with this fertility shit for 4 months and had not even had one attempt.

Another consultation with Dr C.  I have not mentioned how into statistics he is, HSG with oil improves fertility by 30% etc.  He also likes graphs.  He drew them for us with our chances of conceiving with IUI.  My ovaries responded so poorly to the drugs that we would need to use multiple injectables for another IUI, and we would still have a less than 10% chance per cycle.  Or we could use the same drugs, but go for IVF and then we would have a 66% chance of getting pregnant, up to 90% with a second IVF cycle which was much less expensive than the first.  I had been so against IVF, I have a friend who almost died from IVF complications, and I had absolutely not wanted to risk it.  But it felt like our only chance to have a biological child, and if the risk was from the drugs and we would be using the same drugs with future IUI attempts, why not just bite the bullet and go for the option with a good chance of getting a baby?  So May 2010 we took $20,000 out of savings and started the IVF process.

May 2010

First you start on birth control pills for a month.  Yes I am serious, you need to "quiet" your ovaries.  Then on cd3 of the next cycle you start EOD ultrasounds, blood draws for hormone levels and every day pills and injections.  I was upbeat, my ovaries were producing a good number of follicles, the nurses would say how great I was doing, that I would be an IVF superstar.  Then I was really getting a lot of follicles and they adjusted my meds to help mature the follicles and not just produce new ones.  I was feeling really uncomfortable and tired, but hey this was working right?  No complaining we were going to get pregnant from this.  Finally I had enough good sized follicles to trigger ovulation chemically.  They scheduled my egg retrieval, where you go under twilight sedation and they perform a trans-vaginal ovarian ultrasound and poke each of the follicles with a needle and suck the egg out. I was excited to be at this step, my ovaries were the size of soft balls and they would bounce off each other when I would bend over.  It did not feel good when that happened.  The collection went well, 44 eggs were retrieved.  Now they tell you that there is no good number of eggs, it varies for each woman, for some 4 eggs is a good number, but from what I have read 8-10 is good, 12-14 is great, 44 is ridiculous.  I was flying high, we should have embryos to implant and to store!  More babies that we would ever want.  I started to worry about the ethics of having embryos in storage that you just let die, those were my children after all.

After the egg collection you start a new series of medications to make your body think that it is pregnant so that your uterine lining will be ideal when they transfer the embryos.  My eggs were mixed with Mark's sperm in a dish (actually some had a single sperm injected into them) and then were placed in a broth and incubated.  An embryologist would check them every so many hours for signs of division and growth.  This cycle of drugs is the least fun, you are super emotional from all the hormones you were just taking and now your husband has to inject your backside with this 1.5 inch long needle daily.  I was so scared about Mark giving me these injections.  I would cry and panic.  BTW that is not like me, I am cool and collected in a crisis and in general not scared about painful things.  I was still feeling bad.  I thought that once the follicles were ruptured and the eggs taken out my ovaries would stop being so swollen.  I was having technicians help me off the floor in the exam room since I could not get up on my own (I examine any dog over 30 lbs on the floor).  Then the nausea started, I could not eat, I was dizzy and feeling so awful.  One of the worst days I was at work trying to do a dental cleaning with extractions on a dog.  I was sitting on a stool, the dog on the wet table and I had a garbage can in between my legs that I was vomiting into.  I was worried now and I called Dr C's office.  They said that I needed to leave work immediately and come in.  This is no easy feat for a veterinarian, I have a book of appointments and people are CRANKY when you cancel their pet's appointment or they have to wait to be seen since one doctor is now double booked.  I pretty much never leave work, I vomit there, I have diarrhea there, I work with a fever, an ankle so swollen I could not stand on it, I got bit the face my a dog and still worked the rest of my shift, you get the idea.  I left work that day.  Dr C did an ultrasound, I was looking pot bellied and so nauseated.  He found that I had free fluid in my abdomen, all the follicles that had been ruptured to collect the eggs contain fluid and they were still producing fluid that was making me sick and collecting in my abdomen.  This is called hyperstimulation syndrome.  He said that mine was moderate, so I did not need hospitalization yet, but I would need to start an expensive medication to stop this process.  He said that we would likely not implant any embryos this cycle since hyperstimulation syndrome creates and unfavorable uterine environment for implantation.

I barely made it through that weekend, I could not eat or drink anything, I was vomiting all the time, we called Dr C, he prescribed Zofran.  That made it so I could stand without being so dizzy I thought I would fall over, but I could still not keep any solid food down.  Mark called Dr C again after he found me violently vomiting in the bathroom, unable to get up off the floor.  He prescribed Phenergan suppositories.  Now that stuff works great, nausea gone, poof.  The downside is that you feel good and then you are unconscious because it is also a powerful sedative.  While I was in this hellish state we got a phone call from the embryologist, 19 of my 44 eggs had fertilized, which was a great number.  Yeah!  This was working.

They tell you not to call the embryology lab, that they will contact you if there are problems and otherwise don't worry.  So after the good news when we did not hear from them it was no big deal.  The day came for embryo implantation.  I was still really sick, but we went.  I knew that likely the implantation would be cancelled so I was just looking forward to going back home to bed.  I had to ride in a wheel chair in the surgi-center I was so weak from vomiting.  They could not set a catheter since my veins were so collapsed, after 6 tries finally I had an IV.  They wheel me into the procedure room, get me in the stirrups and Dr C shows up.  So my embryos did not mature as they should, most did not divide more than once or twice.  They needed to be a certain number of cells to be suitable for freezing and use on later cycles, none of mine were suitable.  The 4 best would be implanted today, but between their poor growth and my hyperstimulation they only had a 10% chance of taking.  Good news future egg collection cycles were discounted!

The embryos were implanted and I went home to lie in bed for a few days.  I talked to the embryos and told them they could divide and grow now, they were safe with me their mother, not in some petri dish.  We continued the IM progesterone and the vaginal progesterone, and the blood thinners and the hyperstimulation meds.  I went back to work.  I was black and blue from all the shots and limping from the progesterone injections in my backside, but I was working again.  After 2 weeks I took the pregnancy test I was required to, but honestly I was already spotting so I knew that this was not working.  I cried, I fell into a depression.  At least my babies (embryos) died inside me, they were with me at the end.

Mark took me to Coronado Island for a long weekend.  I barely left the room.  We had gone through so much, financially, emotionally and physically and no pregnancy and no stored embryos.

Post IVF consultation with Dr C.  Options, try IUI, start trying naturally again, or another IVF cycle.  We kept asking why IUI was back on the table since we had never even gotten to the insemination stage before?  No answer.  He sent us to the business office to discuss payment options for another IVF cycle, no more money in savings to pay at once.  There they gave us an estimate, it was only $1000 less than the first cycle. Wait, this was supposed to be heavily discounted, that was far less than a 10% discount.  Dr C said that they make no money on IVF and could not charge any less.  IUI was where he made his money.  We left the consult room in shock, at checkout Mark collected himself enough that he had more questions.  The front office staff said that Dr C had left for lunch and was not available for more questions.  Seriously we left his office like 2 minutes ago.  They got the nurse who was with us that day, she came up and said that she was leaving for lunch and could not answer any questions, but we could call later.  WTF!  We spent $20,000, have no baby, no stored embryos and you assholes can't take a few minutes to answer our questions?

We left.  Mark was fuming, I was crying.  No matter what there would be no more treatments at this clinic.

A few weeks later we got the news that Mark's mother had died suddenly.  She had so wanted a grandchild and now would never live to meet one.

Fall 2010

I let my body and spirit heal from the IVF nightmare.  I researched adoption.  Several good friends had adopted children and were so happy.  Mark really wanted to have a child of mine, but I just wanted a baby to love.  My Dad is not my biological parent and he loves me completely, as I do him.  Biology is not that important.  The adoption process is expensive and full of pitfalls.  We were low on savings and could not spend everything to obtain a child, because then were would be nothing left to raise a child.  We would likely need to ask for money from Mark's Dad which was dicey.  He had plenty of money, but does not give it out.  He never offered to help with any of the IVF expenses and would have to be asked to help with adoption costs.  My FIL is not a fan of adoption, he has said so a number of times.  He talks about the poor quality people that give up children and how dumb and defective the kids are.  I was so worried what he may say to an adopted child that would be hurtful and cruel.  Plus Mark was not ready to give up on a biological child.  We went to a new fertility clinic, it was much farther away from our house, but hey we could work that out.  We met Dr J at a evening seminar the clinic had.  He was gentle and kind, after the Dr C fiasco I learned that I need caring doctors.  He said that he could not figure out why we had been pushed into IVF without ever trying IUI. He said that clearly my ovaries worked, he literally almost fell down when he heard that they had harvested 44 eggs from me.  I was scared to hope again, but everything he was saying felt reasonable and right.  Next cycle we would try IUI again.

This clinic was better, we did get to the insemination phase 4 times.  I would grow 2 maybe 3 follicles per cycle.  Dr J was conservative with my medications given my history with hyperstimulation.  Also at this clinic they will not inseminate if you have more than 6 follicles due to the risk of high order multiples.  We tweaked the meds each cycle, tried different progesterone forms.  All the same result, a negative pregnancy test.

Dr J's clinic uses Clomid as it's main drug, not the Femara that Dr C was so fond of.  Clomid is way cheaper, but does crazy stuff to my mind.  For those of you who don't know both of these drugs suppress your natural estrogen, which in turn increases natural production of FSH and you get more follicles.  Side effects of low estrogen are: night sweats, insomnia and mood swings.  Sound familiar, yeah just like menopause.  Femara I never had any of these side effects.  Clomid I would wake up soaked in sweat and then be up for hours.  I watched a entire season of Grey's Anatomy on streaming Netflix between 2 am and 5 am one IUI cycle.  I was so emotional.  I was crying all the time and not about important things.  I sobbed during the movie Beverly Hills Chihuahua because I found it so sad that the Chihuahua had lost her family.  Sobbed, for hours, about a fake chihuahua in a relatively bad movie.

I told Mark that I needed a break.  Dr J said that we could try IUI a few more times, but it was looking like IVF again.  He was nice about it, and we knew that was the case based on the IUI's not working.  I told Mark that I needed a break.  I could not continue these medications cycle after cycle.  I told him that I would not try IVF again, it was too risky and too expensive.

February 2011-July 2011

We went about our normal lives.  It was nice not feeling like an insane person all the time.  I had been on fertility drugs for almost every cycle for a year.  It was nice to feel normal for a while.  I did more research on adoption and was ready to start that process.  Mark was hesitant.  We got a big tax return, hey spend crap loads of money in IVF get good tax return.  We planned a vacation to Kauai.  It would be our special treat to ourselves with the tax return.  As summer approached Mark mentioned going in for another IUI.  I said that I did not want to.  I bought a basal body thermometer and started half heartedly to measure.  I think I recorded like 4 temps out of 7 one week, then stopped completely since they did not make any sense.  Mark talked to some friends that had fertility issues and they recommended the Clear Blue Fertility monitor and the book Taking Charge of your own Fertility.  I planned to order both when we got back from Kauai.

Kauai was amazing, relaxing, beautiful everything that you would expect from Hawaii.  I actually was still spotting from my period when we got there.  I did bring the BB thermometer and did not use it once.  To be honest I had no idea how to interpret the data anyway.

We got back from our vacation and had a big fight.  Mark blamed me for wasting the whole summer and not trying at all to conceive.  I yelled back that I had ordered the book and fertility monitor that week and he needed to lay off.  The monitor came, I unpacked it and read about how to use it.  The TCOYF book came, I read it cover to cover in a day.  I felt empowered, we could do this on our own.  How could I have not known about my own body like this before.  All these fertility doctors and no one tells you this stuff?  Now I just had to wait for my period, then I could start using both.  I waited and waited, no period.  Finally in August I looked at a calendar.  My period was a week late.  That was weird, I was normally really regular.  I had a pregnancy test left over from an IUI cycle, hey why not right?  The positive came up as soon as my urine hit the test strip.



Mark used to joke that the monitor and book worked so well all you needed to do was order them to get pregnant.

That was Grace, that was our baby, on that pregnancy test.  Our dream realized, then taken at 32 weeks.  I miss her so much.  She was our miracle, not getting to keep her seems like the cruelest twist of fate.

Now I am waiting again for my period to start.  I dusted off the book, and the monitor they are ready for use.  I signed up for Fertility friend to help track my BBT and interpret the data.  I measure religiously every morning even though my cycle has not started yet.  I am creating a routine.  I am terrified.  I need to be pregnant again.  I am not sure that I can take another 2 or 3 years of waiting.  I am not sure that I am strong enough any more.  It is even harder now since I know how amazing pregnancy is.  I never felt happier or more alive then when Grace was growing inside me.  Holding her after I delivered her was bliss even though she was still.  My dream was in my grasp and then it was gone, shattered.

Hopefully this long, sad story will give a new perspective on my loss.  Unfortunately I know for some it will be painfully familiar.  This is why every baby is a miracle, the fact that this process works at all is so beyond understanding.  There is God or magic or something there, not just biology.



3 comments:

  1. I read your whole story, thank you for sharing. You have been through an incredible journey and are such a strong person. I hope that you get to experience pregnancy again soon.

    ReplyDelete
  2. I read the whole thing and you are right it gave me a whole new perspective on what you have been through. I can't imagine how it must have felt getting that positive after all that crap and then losing your miracle. I am so sorry and please understand that if I have said anything about fertility that makes it sound like you can just pick and choose when to get pregnant I apologize. I knew a little about infertility but your story really opened my eyes. I am so rooting for you and your husband. I am of course Grace is not with you.

    ReplyDelete
  3. Amanda,
    I've been following your blog since your first post. Thanks for sharing Grace's prologue with us. You're right it really is AMAZING that this happens at all.
    We conceived our children without difficulty but since losing Eva we have fertility problems of our own and it makes the journey that much more obstacle-laden and unsure.
    Love. Em

    ReplyDelete